Introduction2017-03-03T18:35:37+00:00

This paper addresses the question framed by the Law Commission of Ontario:  “What principles and considerations should be applied when considering placing limitations on the ability of persons with disabilities to make their own choices?” The ability to make one’s own decisions based on personal values and in the context of meaningful choices is a defining feature of what it means to be a person and a full citizen.  A basic tenet of liberal-democratic philosophy is that the state has a primary role in protecting autonomy or the right of individuals to choose and pursue their own life path, and all the decisions that entails along the way – related to personal relationships, where to live, educate, work, what health care interventions to accept or reject, and a wide range of financial and property decisions.

Yet many people with more significant intellectual, cognitive and psychosocial disabilities[2] face substantial or total restrictions in making their own decisions.  They often encounter others who presume they are unable to guide their own lives, are people who need to be ‘fixed’, or protected, and who limit or completely restrict the scope of their decision making.[3]  Many people are physically isolated or socially and economically excluded and therefore without meaningful choices or the opportunity to develop a vision and direction for their own lives, and to make their own decisions.[4]  Service provision in the disability and older adult sectors is often based on charity and protection models, and an assumption that because people need supports and care, others should make decisions on their behalf.  Often service providers also require that they are provided decision making authority on behalf of those they are supporting so they can more efficiently manage the range of individual decisions related to care, medications, activities, etc. As people age and their cognitive functioning declines, family, community members, and service providers often respond by restricting the scope of the person’s decision making.  Individual decision making is restricted in informal ways, and also through formally authorized substitute decision making and guardianship. 

There is a growing critique of the substitute decision-making approach to managing individual decision making for people with intellectual, cognitive and/or psychosocial disabilities.  Indeed, as early as 1982, Alan Borovoy directly challenged adult guardianship as

one of the most intrusive encroachments that a democracy can impose… a democratic society has no business rendering people susceptible to the loss of this most precious freedom on the basis of a question-begging definition and elastic terminology.  Indeed, I see no reason why we have to go beyond . . . those kinds of emergency situations where an arguable cause (sic) might be made for some kind of encroachments on a person’s liberty.[5]

 

How the state best protects and enhances autonomy is at the heart of the question this paper addresses.  In this paper we explore negative and positive liberty approaches to protecting and enhancing autonomy.  It is the relationship and tension between the two that informs and guides the analysis throughout. 

Determining a person as incapable or incompetent to manage his or her affairs in some or all respects removes a person’s authority over their own lives and vests this authority in another.  While usually done in the name of protection, such removal of an individual’s legal personhood is increasingly seen from a disability rights perspective as a violation that brings social and legal harm to individuals.  The concern is that individuals are no longer addressed as persons in their own right when their legal capacity to act is restricted, and thus their moral and legal status is more likely to be diminished in the eyes of those in close personal relationships, caregivers, community members, health and human services, and public institutions.[6]  This diminishment contributes to the risk of stereotyping, objectification, negative attitudes and other forms of exclusion which people with disabilities disproportionately face; and which increase powerlessness and vulnerability to abuse, neglect and exploitation.[7] 

Critical analysis of guardianship legislation from a human rights perspective has grown in recent years not only in Canada, but internationally.  For example, the Mental Disability Advocacy Centre has undertaken a number of studies on guardianship law, policy and practice in Central and East European countries, and concludes in one of its reports, with respect to people under guardianship: 

[They] are subject to significant, arbitrary and automatic deprivations of their human rights. These include a deprivation of their right to property, to work, to family life, to marry, to vote, to associate freely, and to access courts. Even if not specifically deprived of certain rights, a lack of procedural capacity ensures their inability to enforce them.[8]

In addition to challenges from the civil and disability rights movements, reliance on this substitute approach to decision making is increasingly challenged through developments in jurisprudence, legislation and international law.  Most recently, the United Nations Convention on the Rights of Persons with Disabilities (CRPD), ratified by Canada in March 2010, emphasizes in its guiding principles respect for individual autonomy, dignity and freedom to make one’s own choices without discrimination on the basis of disability.  Article 12 of the CRPD ‘Equal Recognition Before the Law’ recognizes the right to legal capacity on an equal basis with others without discrimination on the basis of disability and, in Article 12(3), the obligation of States Parties to ensure access to supports individuals require to enjoy and exercise their legal capacity. 

Jurisprudence and legislative reform in Canada and elsewhere are beginning to grapple with what full recognition of the right to legal capacity requires.  There is little doubt that Article 12 has signaled and initiated a major transformation in the law of legal capacity – what many have referred to as a ‘paradigm shift.’  Oliver Lewis has suggested that the CRPD as a whole “has the potential to become a transformative international legal instrument which innovates domestic politics as much as policies” in its expressive, educational and proactive roles.[9]  With respect to Article 12, Gerard Quinn frames the shift as follows:

It is frequently said that Article 12 of the CRPD is emblematic of the paradigm shift of the convention… the deceptively simple proposition that persons with disabilities are ‘subjects’ and not ‘’objects’ – sentient beings like all others deserving equal respect and equal enjoyment of their rights… I want to proceed by laying out what I believe lies at the bottom of the debate – namely conceptions – sometimes competing conceptions – of personhood.  These conceptions are largely unstated but exert a powerful undertow.  I want to work outwards from this notion (or notions) of personhood and onwards to the legal tool of capacity that help to secure notions of personhood in the lifeworld.  I see legal capacity as instrumental to personhood.  I want to use this vantage point as a rust solvent to clear away some easy or formulaic understandings of Article 12 and to arrive at a conceptual frame that helps us to truly grasp the profound paradigm shift of Article 12. [10]

In the second part of this paper we explore more inclusive conceptions of personhood than the traditional ‘understand and appreciate’ test of legal capacity provide, as a basis for a new legal paradigm of legal capacity.  Quinn defines legal capacity this way:

legal capacity… provides the legal shell through which to advance personhood in the lifeworld.  Primarily, it enables persons to sculpt their own legal universe – a web of mutual rights and obligations voluntarily entered into with others.  So it allows for an expression of the will in the lifeworld.  That is the primary positive role of legal capacity.  Let me emphasise this.  Legal capacity opens up zones of personal freedom.  It facilitates uncoerced interactions.[11]

 

 

At the same time there is increasing emphasis on autonomy interests of people with disabilities, there is a growing focus on issues of protection from abuse and the need for treatment for older persons and people with psychosocial disabilities.  Such concerns are valid and should not be minimized in any way given the growing incidence of elder abuse that is evident with a rapidly aging population,[12] the high rate of reported mental health conditions estimated to personally and directly affect 20% of the population,[13] the increasing incidence of mental health issues for older adults,[14] and the hugely disproportionately high rates of violence and abuse against people with disabilities.[15]

One of the most recent articulations of these concerns can be found in the Final Report (August 2010) of the Ontario Legislative Assembly’s ‘Select Committee on Mental Health and Addictions.’  While the Committee did not make specific recommendations with respect to legal capacity, its report expresses a concern that the emphasis on autonomy rights interests and the right to refuse treatment “ties the hands” of professionals and families seeking to get care for clients and family members.  The Committee advocates, therefore, that “the right to autonomy must be balanced with the right to be well” and recommends a number of measures that would effectively place greater constraints on autonomy than is currently the case in Ontario.[16] 

However, any re-balancing away from autonomy interests is notable and concerning in a few respects.  First, there is no recognized ‘right to be well’ articulated in domestic or international law.  Furthermore, conceptualizations of individual and social well-being tend to emphasize that integral to notions of wellness and well-being is the enjoyment of autonomy.[17]  To set autonomy and wellness in conflict seems conceptually, ethically and legally risky.  Further, any direction to shift service delivery back towards more paternalistic models of care, at least with respect to those for whom involuntary treatment is considered to be a valid option, appear to run counter to the CRPD. 

In light of these potentially contradictory developments in both domestic and international law and policy discourse, the challenge for law reform addressed by this paper can be characterized by five guiding questions:

·           To what extent, if at all, can limitations on decision-making rights be imposed given Canada’s commitments to international law on human rights and disability as reflected in the UN Convention on the Rights of Persons with Disabilities?

·           How do we best ensure that people have access to the supports they require to maximize exercise of their legal capacity?

·           What is the role of the state and other entities in ensuring individuals have access to the supports and accommodations required to maximize their legal capacity?

·           How do we balance the right to autonomy with the duty to protect where people’s decision-making abilities are limited, or where they are lacking needed supports, and/or where they are vulnerable to abuse and neglect?

·           How do we manage this balance in a way that does not discriminate on the basis of disability?  

With the aging of the population, advances in medical technology and other factors there is a growing proportion of people with intellectual, cognitive and/or psychosocial disabilities.  These trends make clear the urgent need to find a better balance between autonomy and protection, one consistent with international human rights law as reflected in the CRPD.

To address the guiding questions outlined above, this paper is organized into two major Parts, each with a number of sections:

Part One outlines the context and current framework of capacity law in Canada.  In Section I we introduce and describe key terms on which the analysis rests.  Section II provides an introduction to the UN Convention on the Rights of Persons with Disabilities and the main Articles that shape the examination of law in this paper.  Perspectives from the disability and older adult communities on the issue of autonomy and substitute decision-making are outlined in Section III.  In Section IV we review negative and positive liberty approaches to protecting autonomy, as the tension between the two is central to addressing how to best balance advancing autonomy and protect against abuse and neglect – common concerns that are used to justify substitute decision-making provisions.  With these concepts and framework of international human rights law in mind, Section V  outlines traditional and current legal capacity laws in Canada.

Part Two of this paper looks towards a new legal paradigm for maximizing autonomy guided by the CRPD.  Section I critically examines usual assumptions about ‘who’ it is that exercises legal capacity, and proposes a minimum threshold for recognizing persons capable of directing decision making about their lives.  Sections II and III elaborate a conceptual framework of decision-making supports and decision-making statuses by which legal capacity can be exercised in ways that account for the CRPD’s recognition of the obligation to provide people with supports needed for this purpose.  A re-formulated ‘duty to accommodate’ is presented in Section IV, along with implications for governments and other entities in ensuring that people with disabilities are reasonably accommodated and supported in decision-making processes which are regulated in some way by human rights and other laws.  Sections V and VI explore a range of safeguards to ensure decision-making processes respect the equal right to legal capacity, and look in particular at protecting autonomy in disputes about reasonable accommodation; where decisions fundamentally affect personal integrity; and in the face of serious adverse effects.  These sections propose a range of institutional machinery to implement the recommended safeguards.  Section VII provides a summary of the main concepts and proposals we recommend in this paper.  A concluding section steps back to consider the original questions posed in this paper and the results of the analysis.

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